At its deepest level, MS can make you rethink your life’s values. It can refocus who you are and how you relate to the world around you. Since being diagnosed, have you redefined who you are and what you want out of life?
Being relatively newly diagnosed (Dec 2016) my life has been on a "redefining" rollercoaster ride so to speak. I tend to sweat the "small' stuff less because my plate is full with "big" stuff that truly tests patience & tolerance due to the powerlessness of it all as i hurry up and wait. All i know from experience is that no matter how "dark" things get in 365 days from now "everything" will be refocused with new challenges. For me my MS has been a double edged sword...wish i didn't know now the things i never knew before! Yesterday is history, the future is a mystery that's why today is called the present because it is a gift...hard concept to "remember" many moments. An attitude of gratitude is key i've heard!!!
Before being diagnosed with ms I thought that who i was was defined by what I did for a living, my job, that that was important as a definition of me, a banker with millions of dollars rolling through my fingers every day. Then my body wreaked havoc on me and all I could do was barely hold myself together, every step a stumble into an uncertain universe, the world was never the same. I lost value to myself, i was no longer able to be who I was and do what i did, I was no good to myself or anything else, useless. I floundered neither could I find a home for my self nor a use, i could do nothing, day in and day out, nothing.
Then people began to do things for me, and I remembered all the volunteering I had done, the stuff I had given freely of myself, willingly sharing my energies, my time, my knowledge and my skills, and the joy it brought to me. It made me feel good to give away what I had (was that the communist in me?? or the socialist?? or just a person who likes to share the wealth?? all of the above?? or just a show off??) I now saw myself as the receiver of peoples generosity, the invalid(that label is gone now, but it fit at the time, the one sitting who is the receiver). And I saw that it was my new job, to ge the gracious receiver of gifts, that it was now my obligation to receive the gifts offered to me, and to accept them with kindness and open arms, even though I hated being the reveiver and not the giver. Now, in this position I got to see the look on others faces and the satisfaction they got by giving to me, it was my new job, to totally accept what has been given to me by others, my new role in life, the new me. And yet, the old me still believes that when someone shares their time with me, I msut give them something in return, I can not be a taker, so I smile as grandly as I can, and I say thank you as warmly as I can.
And no, in old age, what do I want out of life? to be honest with myself. Many hours I sit, my body unwilling to meet the needs or wishes of my mind, I stare confused, immobility is not my norm, it is strange, all the things I think I want done yet do not do. If it is what I want, I would be doing it? or is it my mind playing tricks, or my body refusing. So even though I spend hours staring at the boob tube not remembering what I saw, I am peaceful in that I trust myself, my past has proved I have done what I have wanted to do, so I must be doing what i must be doing at this time, even though it does not fit any image of who i think i was or am, this is who I am suppose to be, and my thoughts keep saying maybe, the tyranny of the shoulds, and I let those doubts fade from my mind, because who I was is still who I am and whatever life GIVES me is what i got, so like they say, if life gives me lemons i make lemonade. I guess all I want out of life is to make something out of what I got instead of wishing I got something else, something that I can smile at, like making a rug out of rags, beauty is in the eye of the beholder, that I am fortunate enough to find beauty in what I have, not pitying myself for what I dont have.
Lest my bragging bring on too much euphoria I must acknowledge the long suffering failures, the poor grades that got me labelled a moron, getting fired from a job, filing bankrupcy, disasters at trying to start two businesses, being destitute, living on potato soup without the leeks, living in squallor and the devistation of having my first husband leave me for another woman, all the things one sees as stupendeous failures, humiliations beyond the wildest imagination of what I thought for myself, and having to live through it all, every day beating myself up for not being able to do anything right, not even being able to keep a man, my old school purpose in life. Instead of wearing an S it was a big F I on my lapel, I knew everyone saw it, no escape - doomed to the life of a miserable failure.
Then after diagnosis - which translates to months and months and months of sitting doing nothing, thinking nothing, I began to rethink what the definition of failure really is. To me, a failure is not trying, not not succeeding. Yeah, I got some- alot of marks for poor performance but I give myself an A for effort, not an A+ because some 'failures' left me immobie or paralized too long so there was time wasted wallowing in self pity, poor me, poor poor me, but now I chalk that up to the learning curve, in some things I am a slow learner, only took me fifty years to find my own definition of failure instead of trusting others to define who and what I was, win some lose some? Learning how to redefine myself to feel good about myself and the skin I am living in. It aint easy being me, I just make it look that way.
Redefined myself, I guess I had to. I'm no longer the person who went to work every day, belonged to several clubs, went to church during the week, participated in several physical activities and was happy. Nope, I cannot do most of the activities that I used to enjoy, still mourn over it too, but I try to get out to help others or go to church, but people have to help me do it, not too steady with my cane. I haven't formlated who I am now really. I see, others probably see it too, that I am an old disabled woman.
At this point I do not think I have really redefined who I am due to my MS diagnosis in 2016. I guess it kind of depends on your perspective. It has prematurely forced me out of being an emergency responder - a field I spent nearly 12 years in. So to that extent I guess it has redefined me, but I am still able to work and I still work in public (social) services just not with the emergency element, so to that extent I'd say no.
I've had to make some changes to my lifestyle to accomodate my new found limitations, but I don't see those as me redefining who I am. At the core nothing will change; I am who I am - no more and no less. Will other things change that could be considered redefining? Absolutely, but again at least at this point I don't believe it has redefined me to the core. I do recognize that my perspective on this may change along the way, particularly as my MS is active as new lesions have shown up on recent MRIs. Hopefully the third medicine transition (to Tysabri now, from Copaxone originally and then to Gilenya) will be a winner.
Redefining happens every day. For me, it's an ongoing process of self discovery. That's life. I have been living with MS for 17 years. It's constantly refocusing and redefining and redesigning. I don't know if this is much different than how I lived my life before. In no way am I saying that MS has been easy or that there haven't been really difficult days, weeks, months.....but, I choose to live my best life.
I'm now a person that takes time to appreciate true friends , and to show it by making them special gifts. I'm not able to spend a lot of time together, but designing custom gifts reminds them of my regard.
I am learning a lot about birds, flowers , and fibers for the first time. I was in such a hurry! There's a lot to be said for slow living, upcycling when possible, and sitting still in the woods.